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1. Community Action for Child Health Equity (CACHÉ)

Background: In 2002, the National Institute of Child Health and Human Development (NICHD) began funding a five-site Community Child Health Network (CCHN) to examine how community, family, and individual factors interact with biological causes to result in health disparities in perinatal outcomes and in mortality and morbidity during infancy and early childhood. A large national cohort of families was recruited at the time of delivery with oversampling among African American and Latina women, women with preterm births, and low-income families. The investigators periodically assessed mothers and fathers, measuring individual, family, community, and institutional stressors as well as resilience factors. The three-phase study was designed to (1) develop academic-community partner­ships and pilot studies; (2) conduct a longitudinal observational study to identify the pathways that lead to the disparities of interest, which would be informed by the initial developmental work; and (3) field a systematic study of sustainable interventions to eliminate these disparities, again informed by the observational study. At the time of publication, Phase 1 had been completed and Phase 2, also funded by NICHD, was under way.

CACHÉ is a partnership between the NorthShore Research Institute Section for Child and Family Health Studies and the Lake County Health Department/Community Health Center Women’s Health Services. CACHÉ is a CCHN site in Lake County, located north of Chicago. During Phase 1, the county had 702,682 residents, comprising a diverse mix of individuals from varied races, ethnicities, and socioeconomic status. Even though Lake County had low unemployment between 2000 and 2005, 7.1% of the residents lived below the poverty line (Illinois Poverty Summit, 2005).

Methods: Community-based participatory research (CBPR) approaches were used for this study. Following a kickoff meeting, 27 community leaders volunteered to participate in a community advisory committee (CAC) that still shares in all pro­gram decision making. Interviews with these leaders were analyzed and findings shared with the CAC.

Results: This initial process allowed the community members to come to a con­sensus about the issues facing the Lake County families. The academic researchers and the community were able to create a vision for CACHÉ and a mission state­ment written in the language of the CAC. As CACHÉ transitioned from Phase 1 to Phase 2, the sustainability of the CAC was addressed through an open-door policy for CAC members. Each member was asked to bring whoever they thought was “missing at the table” for the next meeting.

At the national level, community advisors informed academics that collecting saliva or whole blood spots from men in the community would be viewed suspi­ciously because of a legacy of distrust in this population and concerns regarding confidentiality. In contrast, CACHÉ CAC members insisted that all clinically rel­evant testing be offered to fathers and mothers (with adequate explanation of the reasons for testing) and that clinical outreach and referral be offered in cases of abnormal findings. CACHÉ found additional foundation funding to pay for biospecimen collection from fathers, as well as a clinical tracking system and a part-time clinical social worker to provide triage and referrals.

One challenge to a long-term relationship between academic researchers and community organizations is the perception that the academic team has an unfair advantage in writing grants to obtain scarce funds from local foundations. CACHÉ attempts to overcome this challenge by offering technical assistance for preparing submissions for foundation grants to any agency that belongs to its collective.

Comments: Community wisdom brought to bear on the research process addressed local needs and moved CACHÉ to be highly innovative in both the collection of biospecimens from fathers and the communication of clinically relevant research findings to research participants in real time.
Applications of Principles of Community Engagement: The decisions and the decision-making roles that community members and academic members assumed during the initial development phase of CACHÉ exemplify many of the principles of community engagement. The decision to form a partnership with the community by creating a CAC was in line with Principles 1–5. The CAC shared in the process of creating a mission statement, and the collaboration continued throughout this long-term program (Principle 9). One unique aspect of CACHÉ is its insistence that goals be consistent with the overall CCHN objectives but be modified for local conditions. By including the collection of biospecimens against the advice of the CCHN but in response to the needs of Lake County, the CACHÉ program exemplifies Principle 6, which stresses that all aspects of community engagement must recognize and respect community diversity, and Principle 8, which cautions that an engaging organization must be prepared to release control of actions or interventions to the community and be flexible enough to meet the changing needs of that community. Finally, by responding constructively to perceptions that the academic team had an unfair advantage in writing grants, CACHÉ is using Principle 2, which acknowledges that the initiator of community engagement, in this case researchers, must become knowledgeable about the community’s experience with engagement efforts and the community’s perceptions of those initiating the engagement activities.